Canadian initiative fuelled by Terry Fox’s dream may be only hope for young cancer patients

Young cancer patients in rural or remote areas did not always get the testing available

Seeing children suffering with cancer when he was being treated himself broke Terry Fox’s heart and inspired his Marathon of Hope.

Now, those efforts have fuelled a unique initiative to give kids and young adults across the country a chance to live when there are few, if any, treatment options left.

READ: Terry Fox’s story through the eyes of his younger brother, Darrell Fox

Eight-year-old Marlow Ploughman of Shannonville, Ont., has relapsed four times and is on a new drug thanks to genetic testing involving a project that brings together collaborators from over 30 pediatric cancer research and funding organizations.

The girl was diagnosed at age 2 1/2 with late-stage rhabdomyosarcoma, or cancer of the soft tissue, such as muscle, after a vine-like tumour was found in her calf, said her mother Tanya Boehm.

After three rounds of radiation, chemotherapy protocols and at least four clinical trials, there were no therapies left to try as the cancer spread to the girl’s neck and lungs.

A program called Terry Fox PROFYLE, short for Precision Oncology for Young People, seemed to be the only hope for Marlow, Boehm said.

PROFYLE provides precision treatment by sequencing tumour samples on a molecular level and analyzing the vast amount of information at any of three labs in Vancouver, Toronto and Montreal for patients up to age 29, regardless of where in Canada they live.

Until now, young cancer patients in rural or remote areas did not always get the testing available, let alone the collaboration of scientists and researchers from across the country to guide treatment.

“It presents options and time,” Boehm said. ”We were told with Marlow when the cancer came back the first time that she was going to die. … I think it’s fantastic that finally, families like ours have hope.”

Marlow’s oncologist and project leader, Dr. David Malkin of the Hospital for Sick Children in Toronto, said the focus of the five-year project is the approximately 20 per cent of pediatric cancer patients whose disease is considered hard to treat.

“Every pediatric centre across the country is part of PROFYLE and several of the adult centres will also be able to enrol their patients into the study. Even in the pilot phase we have had patients from all provinces now enrolled,” Malkin said.

About 40 people are participating in the study and about half of them have had their tumours sequenced because of the partnership that has so far provided $16.4 million, including $5 million from the Terry Fox Research Institute.

“One of the reasons that PROFYLE is so important is that the cancers that occur in young people are inherently different than they are in adults,” said Malkin.

“We need to be collecting much, much more information on the sequences of childhood and young adult tumours and personalize it and make it more precise so we can work with industry and pharma and develop ways that we can get these drugs for kids,” he said.

About 1,900 youth under age 18 are diagnosed with cancer every year in Canada, and about a third of them would be eligible for PROFYLE, he said, adding that only two other programs in the world come close to what PROFYLE offers.

“What is unique about PROFYLE is that it’s truly national.”

Patrick Sullivan, whose three-year-old son Finn died of rhabdomyosarcoma in 2008, has raised over $2 million for the BC Cancer Foundation and is on the executive committee of PROFYLE, for which he has committed another $250,000.

He said Finn, who was “introverted with a heavy streak of silly,” would have qualified for PROFYLE but the cost of molecular sequencing and analysis was far too high in 2008.

“It not only offers hope for families, which would have been enough for me, it offers a way to integrate this type of approach for kids, adolescents and young adults and for all Canadians,” he said.

Dr. Victor Ling, scientific director of the Terry Fox Research Institute in Vancouver, said Fox, who was diagnosed at age 18 and died four years later, would have qualified for PROFYLE.

“We did not know how to do DNA sequencing in those days, we did not have the drugs that we have now.”

Darryl Fox, Terry’s brother and a senior adviser at the Terry Fox Research Institute, said Terry was passionate about meeting young cancer patients, especially during the Marathon of Hope.

“We’re bringing not only children’s hospitals and fundraisers together but in 1980 he united a country. He brought Canadians together for a common cause and we continue to do that and this program is an example of that.”


@katslepian

katya.slepian@bpdigital.ca

Like us on Facebook and follow us on Twitter.

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Firefighters and RCMP are on scene at a fire on Douglas Street. (Jocelyn Doll - Revelstoke Review)
PHOTOS: Firefighters battling blaze on Douglas Street

RCMP are also on scene and blocking off access to the street

COVID-19. (Image courtesy CDC)
Interior Health reports 18 COVID-19 cases, highest daily count since July

The total of COVID-19 cases in the region is now at 662

A Kelowna clinic decided to immunize their patients in a drive-thru flu clinic earlier this month. (Twila Amato - Black Press Media)
Interior Health anticipates increase in flu vaccinations this season

Some 300,000 doses of flu vaccine ready for distribution across Southern Interior

Zuzana Riha’s last exhibition at the Revelstoke Visual Arts Centre was in October 2018. She has another coming up in November 2020. (Jocelyn Doll/Revelstoke Review)
Revelstoke gallery exhibition opening coming Nov. 5

The November show will feature Zuzana Riha in the main gallery

Snowfall in the Okanagan shatters records. (Contributed)
Snowfall in Okanagan breaks records dated back to 1899

Penticton has received over 10 cm today, surpassing the 8 cm record set in 1957

B.C. provincial health officer Dr. Bonnie Henry gives a daily briefing on COVID-19 cases at an almost empty B.C. Legislature press theatre in Victoria, B.C., on March 25, 2020. (Don Craig/B.C. government)
B.C. sees 223 new COVID-19 cases, now 2,009 active

Two new care home outbreaks in Surrey, Burnaby

Cole Collingwood casts his mock ballot at Vernon’s Mission Hill Elementary School ahead of the provincial election Oct. 24, 2020. (Brendan Shykora - Morning Star)
PHOTOS: Okanagan students cast mock election ballots

At Mission Hill Elementary, the election is a chance to learn about the democratic process

BC Liberals Leader Andrew Wilkinson, BC Greens Sonia Furstenau, BC NDP John Horgan (The Canadian Press photos)
British Columbians vote in snap election called during COVID-19 pandemic

At dissolution, the NDP and Liberals were tied with 41 seats in the legislature, while the Greens held two seats

Thanks to efforts by a Kelowna shelter and Elections BC, anyone who wishes to can vote in the 2020 BC Provincial Election, even if they don’t have a fixed address. (THE CANADIAN PRESS/Darryl Dyck)
Kelowna group ensures people experiencing homelessness can vote

Shelter supervisor says voting ‘a fundamental right’ even for those without a fixed address

Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

(Big White Ski Resort photo)
Big White receives 21 cm of snow in 24 hours

Resort’s snow base 41 cm deep, one month until opening day

The deer were allegedly shot within Princeton town limits, late at night. Black Press File Photo.
Armed man, in full camouflage, allegedly shoots deer in downtown Princeton

‘The list of charges goes on and on,’ said RCMP Sgt. Rob Hughes

Andrew Allen performed for two intimate crowds of 50 at the Vernon and District Performing Arts Centre Oct. 17. (Camillia Courts Photography)
Live events continue on North Okanagan stage

First Andrew Allen plays two sold-out shows, next up have a laugh with comedian Mike Delamont

Most Read